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Cure Sanfilippo Foundation @UCON-eQSD2AihwqNEDl0e07w@youtube.com

8.3K subscribers - no pronouns :c

Every parent dreams about their kid’s future and watching it


42:12
Tips & Tricks on Insurance and ABA Therapy
12:04
ADVANCE 2024: Introduction keynote
01:48:05
ADVANCE 2024: Deep Dive Gene Therapy Considerations
01:10:51
ADVANCE 2024: Impact of Sanfilippo on the Retina
01:18:49
ADVANCE 2024: Deep Dive: Supporting Health Through Nutrition
30:10
ADVANCE 2024: The Advantage of Qualitative Interviews in Clinical Trials
43:53
ADVANCE 2024: Updates on Clinical Trials for Sanfilippo Syndrome (Part 1)
28:49
ADVANCE 2024: Cure Sanfilippo Foundation Programs Affecting Change
59:48
ADVANCE 2024: Advances in Preclinical Research For Sanfilippo
29:38
ADVANCE 2024: Sanfilippo In My Voice: Experience with Brain & Tissue Donation
01:06:23
ADVANCE 2024: Deep Dive: Mitochondria & Metabolism in Sanfilippo
01:04:31
ADVANCE 2024: Drug Repurposing Studies for Sanfilippo Syndrome
24:20
ADVANCE 2024: Evidence-Based Architectural Design Strategies for Enriching Environments
30:58
ADVANCE 2024: How does the “Accelerated Approval” process work?
52:09
ADVANCE 2024: Updates on Clinical Trials for Sanfilippo Syndrome (Part 2)
01:59
ADVANCE 2024: Closing from Cure Sanfilippo founders
24:11
ADVANCE 2024: Sanfilippo in My Voice: Our Experience Living with Attenuated Sanfilippo Type B
06:19
ADVANCE 2024: In Memoriam Tribute
09:23
ADVANCE 2024: "How We Do It" families #1 & #2
10:10
ADVANCE 2024: "How We Do It" families #3 & #4
04:51
ADVANCE 2024: "How We Do It" family #5
06:17
ADVANCE 2024: "How We Do It" family #6
11:59
ADVANCE 2024: "How We Do It' family #7
05:34
ADVANCE 2024: "How We Do It" family #8
10:33
ADVANCE 2024: Closing Remarks at the Regan-Udall Meeting with the FDA
03:15
We need a miracle. Save Lydia.
10:51
Cara O'Neill | Qualifying Biomarkers to Support Rare Disease Regulatory Pathways | Closing Speech
31:32
Life with "Attenuated" Sanfilippo Syndrome | The Kohlmorgan Family
53:33
Durable Medical Equipment (DME) and Sanfilippo Syndrome
54:51
What is Assistive Technology and how can it help your child communicate?
03:16
First time parents watch video they hope will save their daughter
01:19:38
Update on Ultragenyx's Sanfilippo syndrome Type A Gene Therapy program (UX111) - March 26, 2024
02:58
Saving Veda from Sanfilippo syndrome
03:10
A Message to You on the 10-Year Anniversary of Cure Sanfilippo Foundation
11:07
Development of Global Consensus Clinical Care Guidelines for Sanfilippo Syndrome, WORLDSymposium2023
03:31
Parents' first watch of a video they hope will save their daughter Liv
03:15
This video can save our 3-year-old daughter's life: #SavingLiv
00:15
Saving Liv - Coming Saturday, Dec. 3
08:20
New Sanfilippo drug repurposing clinical trial; updates on other research + more
03:29:34
ADVANCE 22 Sanfilippo Conference - Day 1, Part 1
02:14:32
ADVANCE 22 Sanfilippo conference - Day 2, Part 3
02:05:55
ADVANCE 22 Sanfilippo conference - Day 2, Part 2
02:31:14
ADVANCE 22 Sanfilippo conference - Day 2, Part 1
02:35:41
ADVANCE 22 Sanfilippo conference - Day 1, Part 2
01:58:48
ADVANCE 22 Sanfilippo conference - Day 1, Part 3
01:01
TikTok For A Cure - Kickoff from @Love_Logan07
03:38
Alina's Story - One more miracle?
08:54
WORLD Symposium highlights Anakinra early results; upcoming gene therapy trial; + more
09:39
Kicking off 2022; upcoming key meeting with FDA; recent grants, WORLD conference, & more
10:37
Anakinra Trial update, Collaboration with UNC, other research updates, Help Simon, & more
06:42
How All Stripes can help Sanfilippo syndrome research
03:04
Help Simon fight to live and play basketball
12:49
BIG WEEK! World Sanfilippo Day & viral campaign, Trivia Gala, All Stripes & more
13:10
Sanfilippo & accelerated approval; newly-diagnosed guide; World Sanfilippo Awareness Day & more
01:05
2021 Step Up to Cure Sanfilippo | Wrap-Up Video
11:06
Why a podcast?; Photobiomodulation research; the costs of pioneering research; + more
10:34
Patient Needs & Culture of the Laboratory; Kickoff 2021 StepUp fundraiser; families milestone & more
11:39
Get-to-know your child worksheet for school; Sanfilippo on TikTok; Inclusion + more
12:02
Free Educator Guide; Dopamine & Reducing Autism Behaviors + more
10:00
In Memory of Reagan; New testing created; $1M granted for 5 new projects + more